one must still have chaos in oneself to be able to give birth to a dancing star

Monday, February 23, 2009

The announcement

You all know Dante. I knew Dante only because I knew his mom, not very well, through a message board on IVillage for moms of babies born in September 2006. When he was diagnosed with cancer in December 2007, one of the other moms formed a Yahoo group for people on the board who wanted to help Dante and his family.

That group, we called ourselves Dante’s Village Troops, aka, the DVTs.

Because of the generosity of those 15-20 women, we were able to send packages every other week. The packages were everything from Visa gift cards, gas cards, a mother’s bracelet for Dante’s mom, presents for Dante’s siblings and both parents, books, a spa gift card, a grocery gift card.

Pretty spectacular for a group of women who didn’t know each other in real life. And something of which I am very proud.

When Brody had his first surgery at Shriners in Salt Lake, the DVTs even sent us a care package at the hospital, with a $50 food credit in the cafeteria, a stuffed animal, and a book for Brody.

It’s not often that people stun me. I was stunned. And I think it was that moment that I had the beginning of my idea.

Throughout this journey with my miscarriages and Brody, I have struggled to understand, to put it in context. Why me, why us? I thought in a haze of self-pity. Then, as I got to know other kids, I wondered “why us” in a different haze. As in, what am I supposed to be doing with this perspective?

I feel like I am in a unique position. I have glimpsed the terror of having a child with serious medical issues, but we’ve escaped the ultimate loss. We have lived in the hospital, and Ronald McDonald House, and we’ve had to leave our baby in the hospital and go home at the end of the day. I’ve watched them wheel my boy into surgery 11 times. I know what it is to run out of paid leave at work, to wonder which bill to pay that month, to feel isolated in the hospital while the rest of the world goes by, and sit by my child’s bed, watching him desat, listening to him cry in pain, hoping and praying.

To what end?

And why am I being shown all these sick children, and being drawn into their lives through Caring Bridge and Carepages.

All the while, the DVTs are sending packages to Dante and his family. And then Dante passed away, and I missed the flurry of yahoo group posts from my DVTs.

After the first of the year, I was talking to a friend about New Year’s resolutions, and how I didn’t have any. She chided me that I should have some, and asked what me what I really wanted to do?

I said, “I think I might want to start a nonprofit.”

That was really the first concrete inkling. It got me thinking about what a gift we have in Brody, and how unique we are, in that he has a lot of challenges, but not severe challenges relatively speaking. Then I was thinking,what the hell could I offer? I can’t cure childhood illness, and really, is my $50 to fund some research really going to help a family who is lost, alone, and stressed to the point of insomnia and tears?

The next morning, as I was driving to work, I passed by the Church, not mine, that I always pass. The church has, of course, a sign out front. It never said anything really compelling. But that day? It was a new sign. You know what it said?

“What will you do with God’s gift?”

No one ever said the Universe was subtle.

I thought about it. What will I do? What do I have that can help? Then it came to me. I’m a lawyer. I can figure out how to start a nonprofit.

And so I am.

I want to create an organization that helps families of chronically sick children. The families of kids like Dante, Eithene, Elias, Benji, Maggie. . . not just kids with Vacterl, but any child who is chronically ill, whose parents (and siblings) feel like they live at the hospital more than they live at home.

Make no mistake. This is in the infancy stage. I don’t even know what the nonprofit will actually do. I don’t know what the “help” will be (a great deal will depend on the funding, I imagine). I don’t know what the criteria will be, or even the name of the nonprofit.

And when I told my husband that I was seriously thinking about this, he completely flipped out because, he said, “You have a full-time job, and you always say you don’t have enough time for me and Brody, and you have trouble sleeping. Now you’re gonna add a nonprofit to run to all of that??”

Yes. I’m doing it.

Slowly.

We have two more surgeries on the immediate horizon for Brody (that we know about) and I need to really get a few things set financially before we even think about making this reality.

But I’m doing it. As my dear friend C says (you should read her new blog): “unless we follow our hearts, we won’t get where we are meant to be in this lifetime.”

And this is where my heart is leading, so……

As for the name, I can’t decide between something boring like the FirstName LastName Foundation, or something abstract, like ZuZu’s Petals (already taken in the Colorado corporation database). Saturday Brody was looking out the window while we were driving. I asked, “Are you looking at the sky?” He answered, “Yeah. Five skies. I see five skies.” So now I like the Five Skies Foundation or something, but that’s nonsensical.

13 comments:

I love Five Skies or any other name you and Brody come up with. I'm so proud of you -- I love the practical way the DVT's were/are loving and useful. I'm here to help any way I can. I'm good at research, forms, basic graphic design... I can't wait to see you land where you belong.word verification: remuch. which means regarding much love, intelligence, generosity, and spirit.

This is the first time I've ever read your blog but this was an amazingly moving post!If there is anything I can do to help I would love to volunteer to do so.(Press Releases and PR are my specialty. :) )

Christine, wonderful idea. Thank you for including Elias as an example. You have always provided a source of reassurance for us and a witty comment here and there to make us laugh through the tears. As I read your post I found myself shaking my head yes the entire time in agreement. We have also felt this way, what can we do to help others that follow? I have always thought of our journey with Elias as creating a pathway of footprints through rough terrain. If another family has the misfortune to need to travel this way, there is at least a place for them to put their feet and feel confident knowing they are not alone and there is evidence that someone was here before them. As long as the footprints are there it helps them to feel secure knowing others have made it this far and it is still going...So can we! Please count us in for assistance with your project. It is a terrific idea and noble undertaking. We also love the five skies name. It is innocent and pure and something only a child could effectively come up with, and that is what makes it such a nice fit. Good Luck and please let us know what we can do to help make it a reality.

Thank you thank you, to everyone! I'm going to take everyone up on their offers of help. Right now I'm fairly overwhelmed, so I gotta figure out some things. And again, any suggestions are welcome, particularly from parents who have been in the hospital with their child(ren). . . To my SF girls, you guys rock. Truly and deeply.

Thank you for having Maggie as one your examples. I know from being in the hospital(s) having someone send something gave us comfort knowing others were thinking of us. Not that it really ever happened to often. But one time someone sent Maggie a bear, a stranger mind you, and to this day Maggie loves this bear. It sounds all to simple. I also read so many times of families having to go without, having to pay medical bills, having to be at work instead of being there with their child because they HAVE to work to pay the next medical bill. Or not having a vehicle because the only one they own broke down and they do not have the money to replace it because they have to have that money for medications for their child or having to pay a medical bill . Or for those that need to travel to other hospitals to get better care but just don't have the money to stay in a hotel room and they pray by the grace of God something or someone would help so they could go because not all people are willing to help with fundraising. Or helping a family go to something such as the VACTERL Conference. When Maggie was first born we had someone help us go ( we didn't have the money to go because we were dealing with so many hospitalizations) and someone was so kind to help at the time. We can never thank them enough because of their generosity to help us go. It was a much needed break from hospitalizations , surgeries , etc. It was wonderful to meet other families that knew what we were going through. We know there are families from all over that would love to be there but can't because they can't afford to due to their children's medical expenses. And to just even give a family something like that is wonderful in itself too. I guess I could go on all day with ideas. These are ideas that would or have helped us get through it all. If you ever need any help. I would love to help too. I think Five Skies is perfect for the name. Brody came up with it so its perfect :>)

Yes, we did win that vacation from Homeaway.com

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